Muscle pain

[Huginn]

Good morning. I am getting pretty debilitating muscle pain in my core - around my groin and up above. I think maybe these are my rectus abdominis muscles. It’s strange because it has happened before and I don’t’ recall doing anything to cause it. It’s very painful, has lasted days and doesn’t seem to be improving. In the past I have experienced strange low-level deep pain in my lower legs but this is different - sharper.

It was reading 130396’s post that got me thinking - is there a link between MPN and muscle pain? I’m on Interferon (only 90ml/fortnight) but also statins, beta blockers and ace inhibitors for a heart condition.

Thanks,

Josh

[DougyW]

I can't throw any light on your problem but have you contacted your Haematology team for advice?

[Huginn in reply to DougyW]

No, I haven’t DougyW. That’s my next port of call. I know they are so busy and this isn’t life threatening. I thought I’d ask on this excellent forum first because so many answers get spotted here by the members.

Cheers,

Josh

[EPguy]

A sharp pain can be neuropathies rather than muscle pains. One example affecting the area you describe is pudendal neuralgia, discussed here.

my.clevelandclinic.org/heal...

According to this report, it usually has an apparent trigger. If there is no obvious cause it could be worth Dr discussion. Of course it may be something other than this cause.

[Huginn in reply to EPguy]

Thanks EPguy,

Reading the Cleveland clinic article I don’t think that this is the issue, thank goodness. I’m relieved though that it hasn’t raised any EP or medication side effects with you. I’ll keep up the gentle exercise and hope it improves.

Thank you.

[SoledadBarcelona in reply to Huginn]

Proper exercise with a personal trainer, an antiinflamatory diet, any suplements to cover the lack of micronutrients, taking care of your microbiote where is the 70 to 80% of the immnune system (an experto in it, helps), neurostimulation once a week work for me. Hope it helps you.

[Hatchie]

Hi Huginn,

From my experience doctors have limited knowledge in the understanding of MPN related pain.

For background I have dislocated my hip, broken my wrist and torn my biceps off the bone. I have had a hip replacement, 8 surgeries on my now particularly fused wrist as well as compartment syndrome and spontaneous muscles bleeds. I would consider myself competent in the ability to identify different types of pain at only 43.

With my MPN I have experience migraines, severe bone pain in my legs and lower back, abdominal discomfort/pain and unexplained bilateral shoulder and lower back pain with associated weakness.

It has taken effort to get the scans required to rule out issues. Until recently I had tried all types of pain medication without any relief.

Due to all my self advocacy/complaining I also see a palliative care doctor who has a genuine interest in resolving the issue. Through trial we were able to find something to help. In my case pregabalin helped which suggests that it was more likely neuropathic pain.

Even the best MPN specialist has no idea what it feels like to have a MPN. It takes patients like us to educate ourselves and try to help them understand how we are feeling to get a better shared understanding of how to manage our disease.

[Huginn in reply to Hatchie]

Thank you Hatchie,

I’m so sorry to read of all the complications and unpleasantness that you’ve experienced and I’m glad that at last you’ve a doctor who is working holistically with you. I will take my Symons to my consultant and see what he says. It’s difficult now because there is such churn in the medical departments.

[william-Indo in reply to Hatchie]

That is true.

It is related to neuropathy not muscle.

Avoid any inflamation caused diet

I took Pregabalin 75mg for a month and the simptom disappeared till now.

Hope it may help.

Cheers

[Tipsy2023]

Morning Josh

really interested in your post as I experienced groin and pubic pain for some years also debilitating muscle cramping spasms so much so I couldn’t squat kneel sit in the floor cross my legs without them going into spasm . The pains in my pubic bone and what I call sit upon bones has been excruciating. It had been queried that I had spinal stenosis and had high dose injections of steroids. But I was undiagnosed and had had ET for 8 years and Sjögren’s syndrome for even more years without a correct diagnosis .

Since platelets have been controlled clopidigrel Hydroxycarbamide. Hydroxychloroqine treatment for Sjogrens the pain is so much better and spasms rarely . I still have bone pain but not constantly .

Hydroxycarbamide I have not tolerated well but it was very effective with platelet reduction and after 18 months a reduction in dose my fatigue is a little better.

In my view and experience the pains do relate to the condition . But just my thoughts . L

[SoledadBarcelona in reply to Tipsy2023]

Agree

[hunter5582]

Pain is warning that something is wrong. It may or may not be related to the MPN. Even if not related to the MPN, the systemic inflammation caused by reregulation of the JAK-STAT pathway can exacerbate the symptoms. It is ls worth noting that the interferon can cause side effects like arthralgia and myalgia.

You should let your MPN care team know what is going on. Hopefully it includes a MPN Specialist who is familiar with interferon side effects. Other members of your care team will likely need to be involved to help figure out what is going on. There may be more than one factor involved.

WIshing you success moving forward with resolving the pain.

[Janis12]

Muscle and joint/bone pain is a known side effect of pegasys and muscle pain is a known side effect of statins. Perhaps the two drugs together have tipped the balance. My long term muscle and joint pain became worse after starting on pegasys, eleven months in and I am having a rethink. I would mention it to your haematologist but the other issue is that not all symptoms are due to our MPNs or the medication so it is worth involving your GP also. Good luck.

[srtdc]

It's well known that statins deplete the body of CoQ10 and can cause muscle pains. When taking any statin, supplementing with the Ubiquinol form of CoQ10 is recommended. The Ubiquinone form is poorly absorbed. It's worth trying ....Wishing you the best...